Thursday, December 29, 2011

Christmas season

We had a wonderful Christmas season this year & I figured I'd share a bit of the fun! Santa came & brought light sabers galore. I feel like that's saying enough on the subject because everyone knows how much this boy loves Star Wars!  So we've seen a lot of this lately:

Christmas day was really special for us. Seeing as it fell on a Sunday we went to church Sunday morning. Joshua's older sister Callie sang a solo at church. It was a very touching moment for us and we were so proud of our little girl.  So many family members came to watch her. It was such a treat for her to stand and spot family members in the crowd who she didn't even know were coming.  We had known most people planned on coming, but figured they'd be tied up with their own Christmas morning traditions....however, everyone made it out! It made Christmas day even better than it already was!

Now back to our Joshie boy!! Jon took Joshua out for his first "hunt" last week, before Christmas.  He has always wanted to do this type of thing with Josh & the timing worked out perfectly for our hunters! I use the term 'hunt' loosely...more like hiking...but Josh got to fire that gun a time or two & it was an experience he'll never forget!
As for Joshua's heart, people ask me frequently how he's doing. He's doing okay. He's progressing slowly, but he is progressing. I guess that's all we can ask for at this point. I've realized lately that his mood is closely linked with his physical well being.  He was quite moody in the weeks that led up to his hospitalization & he's beginning to be much more like his old self again.  Now when I wonder how he's feeling I start by noting his temperament that day & its usually a good indicator of how he's doing on the inside. 
Do any of you heart moms notice the same?
Anyway, things aren't bad & we are excited to see what the new year has in store!

Happy New Year to you & your family!

(by the way, Joshua owns more than one shirt...he just prefers to only wear one of the shirts he owns!)

Sunday, December 18, 2011


When Josh was in the hospital at the beginning of the month, we had a visitor drop in and tell us that Josh was being nominated for Make-A-Wish! How incredibly exciting! When she explained to Josh what Make-A-Wish is he was beaming! He was so excited and has been talking about it ever since that day.  Well this past Saturday was his day to make his wish. It was awesome! Josh could hardly contain himself & bolted out of the car & into the Wishing Place. Upon arrival he was given a Light did they know?!?
After they explained how the whole process works, he was taken to 4 areas of the Wishing Place where they asked him 4 questions, to determine his one true wish!

First, he was asked if he could be anyone in the whole wide world for a day, who would he be? His answer "A Storm Trooper, oh or Darth Vader!"  Second, if he could meet anyone in the world, who would he meet? Again, "Darth Vader....and Anakin!" (are you picking up on a common theme yet?)
Then he was asked if he could have anything in the world, what would he want? He said, "I want a green light saber!!!"...He already has a red one & 2 blue ones, so naturally that would complete the set.  And finally, they asked if he could go anywhere in the world, where would he go? As he stood facing a picture of a huge cruise ship (you can kind of see it in the picture above) he said, "On a boat."
Jon & I couldn't help but laugh at every answer he gave. It was just so cute & so Josh. They questioned him more a while later to see if they could get anything more out of him & at that point he said, "Oh yeah, I also want a gun!"

After determining what he wanted, he was presented a key to the magical wish room where he deposited his wish. It was cool! There was a light show & music playing once his wish was made...but the camera on my phone didn't take a very good picture of that, so just picture the magic in your mind.

Finally, we were all given special wishing coins to make our own wishes in the fountain. It was neat for the rest of the kids to be included! They all had a great time & I know they'll never forget this day. Before we left they had one last surprise for the kids...they were all allowed to choose a new set of jammies! They had a huge table of cozy pj's and the kids were all so excited to choose their own pair & within a minute of walking in the door after arriving home, all 4 of the kids were in their new jammies!
We feel so lucky to have Joshua chosen to make a wish.  I can't help but get choked up every time I think about it. So many generous people make this possible & we are endlessly thankful to everyone. 
Now we wait to be contacted & Joshua will be presented with his wish after the wish granters have some time to coordinate!

Friday, December 16, 2011

status update:

I just flipped through the pictures on my phone & thought this was kinda's from his hospital stay 2 weeks ago. (He's home now.)

To quickly catch up, shortly after Joshua was released from the hospital he & the rest of the family (except for Jon) came down with a terrible stomach virus. I don't want to even think about it lets just leave it at that. Awful. Needless to say it was hard on Josh and was a set back. But he's better this week & is nearly back to the old Josh. He's been a bit moody which usually means he's not feeling great, but he's headed in the right direction. Definitely the best week he's had this month.
I took him to the cardiologist on Wednesday & left feeling a little bummed. I was hoping to hear that his heart looked great & he's back on track, rather I heard that it'll likely take a few months to get him back where they'd like to see him. I guess I was a little in denial about his current condition....because obviously his heart isn't going to look great especially after vomiting & diarrhea for 8 days. But he is improving, so I'll take that.
Anyway, Joshua has a very special day in store for him tomorrow...I'll post on that soon!

Friday, December 02, 2011


As I mentioned before, Monday started out as a regular visit to the cardiologist.
But turned into this.....

Which really wasn't all that bad.

Joshua was admitted on Monday & released on Thursday. He was on a few IV meds & lost a lot of the fluid his body had been holding onto.

As far as hospital stays go, it was pretty short & only involved 3 pokes, which is pretty lucky for a heart kid spending 4 days in ICU.  Since we were so close to home this time instead of UCSF he had a ton of visitors. Joshua always loves having visitors - so being close to home was nice! BUT we did miss that feeling of family at UCSF...we have become so close to the nurses and doctors there and we love them & miss them.

The whole experience overall was positive, because his state wasn't as critical as we are used to during hospitalizations. So he had a lot of fun. Don't get me wrong, he definitely had his share of difficult moments & sadness.  But they were just moments.

We had many family members & friends help out in various ways. You realize at times like this how truly blessed you are to have them in your life. We are so grateful for all of you.

Joshua was released yesterday & now we are home getting used to all of the new meds & relaxing. Trying to catch up on sleep. Even though the stay was pretty low key, not much sleeping ever takes place in a hospital room. So our plan for the next few days...sleep!